For the five months of pregnancy that I knew my unborn baby would die I was unable to sleep at night. I opened a new Google page and put in the words “trisomy 18.” I tried different combinations of “infant death,” “genetic defects,” “pregnancy without a baby” and I kept coming up empty. I’m not sure what I was looking for, but perhaps I wanted a literary essay grappling with the reality of a pregnancy that would end in death. Perhaps I was looking for some discussion of shamanism or another spirituality to give me some understand of my place on the planet. I remember those first days, sitting on the warming Earth with my hands on the ground. My son was toddling around the yard and I heard the words “Not all beings live long” in my heart center. I was in shock and I was searching for some support about living in the reality of my situation.
After reading through the medical information about trisomy 18, I found some writings that were very Protestant and difficult for me. I read a book by a Christian woman who could not believe that her baby died when she had asked Jesus for a miracle. There were a few blog posts and articles that said that if you have faith in Jesus, then you demand your miracle and you fight the diagnosis. I was perplexed. I did not grow up in a Christian faith that makes demands on God, though perhaps we have all done this at some point. I understood the Orthodox Faith to be the faith of Mary, the Mother of God, who said “Be it done to me according to Thy will.” The faith of St. Seraphim of Sarov and St. Xenia, of St. Mary of Egypt, fool for Christ, St. Anthimos of Chios and St. Nectarios, the humble bishop of Aegina. Again and again our saints and teachers tell us we have to submit to the reality of our lives, to God’s will, fate or karma. Whatever language we use, we are walking the path of life and challenges appear out of nowhere. Our American culture does not offer much support for those of us going through life-threatening and grief-filled situations. I could not change Mary Rose’s “diagnosis” but I could honor her life and her death.
Several weeks after finding out about my unborn child’s condition I found the book For the Love of Angela by Nancy Mayer-Whittington. I read it at night when I could not sleep. I was so relieved to have found a book that resonated with my situation. Mayer-Whittington, who is Catholic, had a few miscarriages between her eldest daughter and her pregnancy with Angela, who died of trisomy 18 shortly after birth. The book had short chapters which were perfect for someone in my state of mind. Mayer-Whittington writes of her acceptance of her daughter’s condition, her path and grief, and her work to use her circumstances for some good. In one of the poignant moments in her book she writes about hearing a song on the radio that had been played at her wedding and embracing her pregnant body to dance with her unborn child. Meyer-Whittington knew that she would not have the chance to sway and dance with her child in her arms so she enjoyed this precious moment with Angela. I cried and finished the book quickly. Then I wrote an email to Nancy.
I read in the book that she and another woman whose baby had died, Cubby LaHood, founded a non-profit organization to support parents who choose to continue pregnancies after a fatal or life-threatening diagnosis. In my grief and shock it didn’t occur to me that I could ask for help from Isaiah’s Promise. I wrote to thank the writer for her book and to let her know how much she was comforting me. Within a few days I had an email from Cubby, who mentored me throughout the pregnancy and who remains a dear friend. Cubby asked for my address and within two days I had beautiful gifts coming to my door. Isaiah’s Promise sent presents for my unborn baby when most people would not consider such a thing. Their volunteers made beautiful blankets, including a pink and white blanket with Mary Rose’s name stitched on it, a baptismal gown and tiny booties for a premature baby, a baptismal kit, the book Letters to John Paul: A Mother Discovers God’s Love in her Suffering Child by Elena Kilner, a prayer shawl, and other thoughtful and touching gifts that surrounded our few moments with Mary Rose. Cubby, whose newborn son, Francis, died many years ago, has lived her life in service to others. I did not know that she was battling cancer as she wrote to me. She didn’t want to add any stress to our difficult pregnancies by telling us of her own struggles.
Isaiah’s Promise cites the scripture from Isaiah 49:15 “See, I will not forget you. I have carved you on the palm of my hand.” They have a beautiful documentary on their website interviewing a few of their families. They recently published an Isaiah’s Promise Tribute Book honoring a few of the babies in their 25-year history. I am so honored that Mary Rose is featured in those holy pages among so many other intercessors.
Isaiah’s Promise might be an anomaly in that most of us deny and hide from the reality of babies with genetic defects and their subsequent deaths. However, we can all become more sensitive to those with illnesses and fragilities, not just our babies who are challenged from the womb, but our elderly and our bereaved. Nancy and Cubby met decades ago and decided that together they would support others going through the challenges of similar pregnancies. Instead of hiding from the presence of other children who would no doubt remind them of their own deceased babies, they stepped forward and embraced dozens of children who were deformed, defected, and perfectly beautiful. I count Nancy and Cubby as my life teachers. I too am writing to comfort even a handful of people. Instead of putting Mary Rose behind me, as some would want me to do, I am taking her with me on my path, and I will pause along the way to offer love and comfort to the mothers of our Graces and our Ryders. There is no greater love than this… Loving our children unconditionally is easy when we have a community to uphold us in prayer, love and action.